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Okay , so for the people that is saying it is something dealing with keratin or overload of keratin... i know you guys have more sense than that!!!! For the ones screaming morgellions* disease, I bet yall believe every word a doctor tells u huh??? These are worms and most definitely more than just 1 or 2 types!!!!!!!!!! And it all started with pets and walking barefoot! I have found evidence of pinworms, hookworms and tapeworm plus all kinds of other. Bull crap kinda worms and parasites the devil him self seen fit and create! Please somebody help... we can't just keep eating ivermectin and when im done with the dosing the week after THEY COME BACK TIMES 100000000!!!!!! yes I take a binder before and after! I have taken chemical baths in cleaning products and everything else! They hate salt and baking soda it seems! I dont go in public wear long sleeves like a junkie all year round and lost a few jobs... im losing my self more than I ever have.
A Keratin induced foreign body granuloma makes sense why the lesions will not heal until the plugs are removed. Keratin spilled out from a ruptured cyst, picking acne, a hair follicule or a scratch into the surrounding skin and created an immune response to a foreign body aka the keratin plugs. So as soon as the plugs are removed, it heals. Topical steroid creams seem to be the answer once the lesion is large, inflamed etc.
A Keratin induced foreign body granuloma makes sense why the lesions will not heal until the plugs are removed. Keratin spilled out from a ruptured cyst, picking acne, a hair follicule or a scratch into the surrounding skin and created an immune response to a foreign body aka the keratin plugs. So as soon as the plugs are removed, it heals. Topical steroid creams seem to be the answer once the lesion is large, inflamed etc.
keratin foreign body granuloma usually happen at a single-site/one spot on the body, so I wouldnt say that matches up with what I have experienced at least. At my worst, it was covering multiple areas of my body (face, hands, chest, etc). Also doesnt explain the hairs and fibers growing underneath my skin. For me, I ended up being positive for Lyme and Bartonella. But others may have different infections going on at once.
@mmmari Thank you for posting this! I will also warn you that Duke Dermatology will have no idea. You're skin biopsies (that are a general look) show nothing. I already know this to be true. Natural Killer Cells (Immunology) control Herpes infections, and viral infections. Any type of Herpes infection has the potential to be a contributor/cause. I had a skin biopsy that came back positive for Herpes, but the second round came back negative. I don't know the answer. Ask Duke to test your Natural Killer Cells, numbers and function, or your Insulin/C-Peptide along with glucose, and an Oral Glucose Tolerance Test. "Diabetes" does cause skin ulcers, but this is different than T1 or T2. No skin biopsy can ever prove "Diabetes". I am negative for all Type 1 Diabetes antibodies (so not T1), and I am thin without insulin resistance (so not T2). These tests won't give you relief, but it will add to your case and maybe get you medication. I also have many sex hormones that are off. Insulin is also a hormone, as well as what's happening with your Thyroid. All Hormones. For hair issues, which I also have, I recommend electrolysis over laser. Laser isn't permanent, but it can still be helpful. Also chemical face peels (over CO2 laser, etc) helps remove old skin, bring the hairs to the surface. Not suggesting this, but technically you can do chemical peels yourself, but be very careful and read directions. I am not a doctor and you should not listen to me.
From AI
Follicle Treatment Explanation
Whats Happening Inside Deeply Blocked Follicles: Keratin, oil, dead skin, and microbes can accumulate deep inside hair follicles. This buildup forms plugs that create pressure, inflammation, itching, and raised bumps.
Why Itching and Pressure Occur: Inflammation and nerve irritation occur when plugs expand or move upward. Drying or peeling skin can also trigger itching.
What Sodium Sulfacetamide + Sulfur Does: Reduces bacteria, lowers inflammation, softens keratin buildup, and helps plugs migrate toward the surface.
What De La Cruz Sulfur Ointment Does: Helps dissolve oil, reduces microbial growth, and softens thick keratin layers. Works more slowly but can provide longer surface contact.
Why Plugs Feel Anchored: Keratin can form dense, sticky masses that attach to follicle walls. As treatments soften these masses, they gradually shrink and loosen.
What Healing Usually Looks Like: Reduced itching, shrinking bumps, plugs moving upward, and occasional natural release.
Warning Signs To Monitor: Rapid swelling, severe redness, spreading warmth, pus, or fever should be medically evaluated.
My progress is going slower than I like, but I do have firm progress, which I didn't have from all the other prescriptions, and over the counter treatments for years. My condition isn't a parasite, I tested this years ago when I pulled the white goo plugged follicles. I would put them under a microscope, they would have no activity.I even left 1 in rubbing alcohol, 1 in bleach for weeks in a tube and if it was a parasite that was organic it would have dissolved especially with bleach. Keratin is the same organic compound as finger nails so if you cut your fingernails and put it in bleach or alcohol it wouldn't dissolve. It is not living organic material, that's why you don't feel pain when a fingernail is cut unless you cut a nerve in your fingers or foot while cutting it. These did the same thing as a fingernail would do. I believe my condition is keratin not a parasite. Good luck to everyone, I know it's frustrating 🙂
From AI
Follicle Treatment Explanation
Whats Happening Inside Deeply Blocked Follicles: Keratin, oil, dead skin, and microbes can accumulate deep inside hair follicles. This buildup forms plugs that create pressure, inflammation, itching, and raised bumps.
Why Itching and Pressure Occur: Inflammation and nerve irritation occur when plugs expand or move upward. Drying or peeling skin can also trigger itching.
What Sodium Sulfacetamide + Sulfur Does: Reduces bacteria, lowers inflammation, softens keratin buildup, and helps plugs migrate toward the surface.
What De La Cruz Sulfur Ointment Does: Helps dissolve oil, reduces microbial growth, and softens thick keratin layers. Works more slowly but can provide longer surface contact.
Why Plugs Feel Anchored: Keratin can form dense, sticky masses that attach to follicle walls. As treatments soften these masses, they gradually shrink and loosen.
What Healing Usually Looks Like: Reduced itching, shrinking bumps, plugs moving upward, and occasional natural release.
Warning Signs To Monitor: Rapid swelling, severe redness, spreading warmth, pus, or fever should be medically evaluated.
My progress is going slower than I like, but I do have firm progress, which I didn't have from all the other prescriptions, and over the counter treatments for years. My condition isn't a parasite, I tested this years ago when I pulled the white goo plugged follicles. I would put them under a microscope, they would have no activity.I even left 1 in rubbing alcohol, 1 in bleach for weeks in a tube and if it was a parasite that was organic it would have dissolved especially with bleach. Keratin is the same organic compound as finger nails so if you cut your fingernails and put it in bleach or alcohol it wouldn't dissolve. It is not living organic material, that's why you don't feel pain when a fingernail is cut unless you cut a nerve in your fingers or foot while cutting it. These did the same thing as a fingernail would do. I believe my condition is keratin not a parasite. Good luck to everyone, I know it's frustrating 🙂
I also been on Ai, I learned the same thing! I had some hair knots come out of me!? I do think a lot of us ended up having a 2nd problem due to our bodies unable to flow correctly. After I did the parasite cleanse I did get dramatically better! Also, after taking a breathe test I did have bacteria in my stomach. The main cause is the body overloading on protein and keratin. The hairs are dry and starchy, when they come out they can move due to the hairs trying to grab moisture from the air. Ai says we need a systemic reset by using the oral meds like acitretin or isotretinoin. The topical meds to thin skin out is salicylic acid and urea 20-40%. There is store brands that are not as strong but will work. I have a doc appt in a couple weeks just to get these meds. After reading a lot about this I believe this may be the answer to morgallans disease! This has been like living in hell! Burning and stinging from the inside out! Thanks to Ai I believe we have found the answer!
From AI
Follicle Treatment Explanation
Whats Happening Inside Deeply Blocked Follicles: Keratin, oil, dead skin, and microbes can accumulate deep inside hair follicles. This buildup forms plugs that create pressure, inflammation, itching, and raised bumps.
Why Itching and Pressure Occur: Inflammation and nerve irritation occur when plugs expand or move upward. Drying or peeling skin can also trigger itching.
What Sodium Sulfacetamide + Sulfur Does: Reduces bacteria, lowers inflammation, softens keratin buildup, and helps plugs migrate toward the surface.
What De La Cruz Sulfur Ointment Does: Helps dissolve oil, reduces microbial growth, and softens thick keratin layers. Works more slowly but can provide longer surface contact.
Why Plugs Feel Anchored: Keratin can form dense, sticky masses that attach to follicle walls. As treatments soften these masses, they gradually shrink and loosen.
What Healing Usually Looks Like: Reduced itching, shrinking bumps, plugs moving upward, and occasional natural release.
Warning Signs To Monitor: Rapid swelling, severe redness, spreading warmth, pus, or fever should be medically evaluated.
My progress is going slower than I like, but I do have firm progress, which I didn't have from all the other prescriptions, and over the counter treatments for years. My condition isn't a parasite, I tested this years ago when I pulled the white goo plugged follicles. I would put them under a microscope, they would have no activity.I even left 1 in rubbing alcohol, 1 in bleach for weeks in a tube and if it was a parasite that was organic it would have dissolved especially with bleach. Keratin is the same organic compound as finger nails so if you cut your fingernails and put it in bleach or alcohol it wouldn't dissolve. It is not living organic material, that's why you don't feel pain when a fingernail is cut unless you cut a nerve in your fingers or foot while cutting it. These did the same thing as a fingernail would do. I believe my condition is keratin not a parasite. Good luck to everyone, I know it's frustrating 🙂
I also been on Ai, I learned the same thing! I had some hair knots come out of me!? I do think a lot of us ended up having a 2nd problem due to our bodies unable to flow correctly. After I did the parasite cleanse I did get dramatically better! Also, after taking a breathe test I did have bacteria in my stomach. The main cause is the body overloading on protein and keratin. The hairs are dry and starchy, when they come out they can move due to the hairs trying to grab moisture from the air. Ai says we need a systemic reset by using the oral meds like acitretin or isotretinoin. The topical meds to thin skin out is salicylic acid and urea 20-40%. There is store brands that are not as strong but will work. I have a doc appt in a couple weeks just to get these meds. After reading a lot about this I believe this may be the answer to morgallans disease! This has been like living in hell! Burning and stinging from the inside out! Thanks to Ai I believe we have found the answer!
I'm glad to read you are making progress 🙂 I am too, it's just deep plugs under my chin, I have progress, but not as fast as I would like, they itch and they are irritating but they are coming up and slowly softining. At this pace maybe in three to six months this will be resolved for me. Longer than I'd like but it's probably impatient on my part since I have dealt with this for 30ish years.
From AI
Follicle Treatment Explanation
Whats Happening Inside Deeply Blocked Follicles: Keratin, oil, dead skin, and microbes can accumulate deep inside hair follicles. This buildup forms plugs that create pressure, inflammation, itching, and raised bumps.
Why Itching and Pressure Occur: Inflammation and nerve irritation occur when plugs expand or move upward. Drying or peeling skin can also trigger itching.
What Sodium Sulfacetamide + Sulfur Does: Reduces bacteria, lowers inflammation, softens keratin buildup, and helps plugs migrate toward the surface.
What De La Cruz Sulfur Ointment Does: Helps dissolve oil, reduces microbial growth, and softens thick keratin layers. Works more slowly but can provide longer surface contact.
Why Plugs Feel Anchored: Keratin can form dense, sticky masses that attach to follicle walls. As treatments soften these masses, they gradually shrink and loosen.
What Healing Usually Looks Like: Reduced itching, shrinking bumps, plugs moving upward, and occasional natural release.
Warning Signs To Monitor: Rapid swelling, severe redness, spreading warmth, pus, or fever should be medically evaluated.
My progress is going slower than I like, but I do have firm progress, which I didn't have from all the other prescriptions, and over the counter treatments for years. My condition isn't a parasite, I tested this years ago when I pulled the white goo plugged follicles. I would put them under a microscope, they would have no activity.I even left 1 in rubbing alcohol, 1 in bleach for weeks in a tube and if it was a parasite that was organic it would have dissolved especially with bleach. Keratin is the same organic compound as finger nails so if you cut your fingernails and put it in bleach or alcohol it wouldn't dissolve. It is not living organic material, that's why you don't feel pain when a fingernail is cut unless you cut a nerve in your fingers or foot while cutting it. These did the same thing as a fingernail would do. I believe my condition is keratin not a parasite. Good luck to everyone, I know it's frustrating 🙂
I also been on Ai, I learned the same thing! I had some hair knots come out of me!? I do think a lot of us ended up having a 2nd problem due to our bodies unable to flow correctly. After I did the parasite cleanse I did get dramatically better! Also, after taking a breathe test I did have bacteria in my stomach. The main cause is the body overloading on protein and keratin. The hairs are dry and starchy, when they come out they can move due to the hairs trying to grab moisture from the air. Ai says we need a systemic reset by using the oral meds like acitretin or isotretinoin. The topical meds to thin skin out is salicylic acid and urea 20-40%. There is store brands that are not as strong but will work. I have a doc appt in a couple weeks just to get these meds. After reading a lot about this I believe this may be the answer to morgallans disease! This has been like living in hell! Burning and stinging from the inside out! Thanks to Ai I believe we have found the answer!
I'm glad to read you are making progress 🙂 I am too, it's just deep plugs under my chin, I have progress, but not as fast as I would like, they itch and they are irritating but they are coming up and slowly softining. At this pace maybe in three to six months this will be resolved for me. Longer than I'd like but it's probably impatient on my part since I have dealt with this for 30ish years.
Looking back, I think I was about 10 years old when it started, I'm 41 now. Shit is living in real life hell
Just to let you know, Doctors told me that if I "ever found anyone similar to me" that they would consider your case as well for genetic testing. If others were involved, it could help shorten the time required to confirm the genetic mutation. This means that at a minimum you would need Natural Killer Cells tested - both numbers and function, and a Cytokine Panel (both Immunology), if you had additional testing such as the 5 blood tests (never just 3) for your Thyroid as well as Insulin, C-Peptide, and glucose (if not others), it would certainly be helpful and more likely to be noticed as similar to me. It took me many, many years to get to this place, and this could actually be a fast-track for you, if you can get the testing. If you are one of the few who actually pursues this, your best bet is to DM me after getting your test results back, otherwise I won't be notified. It might even be fine to DM me if it's 2031 and you are reading this for the first time and have data/test results- you still might be the first to respond.
Just throwing it out there.
"Laboratory evidence of abnormalities that were commonly encountered included anemia, leukopenia, high monocyte count, low natural-killer cells, elevated serum calcium, elevated globulin levels, and elevated inflammatory markers (CRP, TNF, IFN)." https://www.tandfonline.com/doi/full/10.2147/CCID.S152343#d1e1787
I have been following this thread for two years. i saw a derm and had a horrible experience. Tried working with my GP who was useless so I have been left to try to fix this on my own. I have been suffering with this problem for many years and have tried the following:
1. Almost every single topical anti fungal
2. ivermectin
3. oral fluconazole
4. oral terbinefine for 2 months
5. Tret/finecea/tacrolimus ointment
6. many different antibiotics treating for staph
probably other things but I cant remember at the moment.
I got a prescription for a different anti fungal called Itraconazole (oral) and in one week my skin has cleared up 70%. I cant believe it. All along whatever this fungus is was resistant to the anti fungals I had tried.
I found I started getting these sores after starting vyvanse (medication for adhd). I think that it had something to do with extra sebum production on top of possible a damaged skin barrier from a combination of things (dermaplaning etc)
I hope this helps someone because this has been so hard to deal with.
@nurse123 Hi! Can you please specify what dose of itraconazole you're on, how often you take it & how long you're going to be on it? I'm going to have to dig through some files because I don't remember if I previously tried fluconazole or itraconazole & now I'm wondering if it's worth a shot. Are you still doing better now?
@skinshit Im taking 400mg daily for one month.
yes skin is still improving. Some of the spots have started to close. Crazy because its been years of this.
Hi everyone,
It's been a while since I've posted, sorry for the radio silence. It's been difficult, my skin is still really bad and I'm still struggling a lot. But here's what's been happening since I posted last (strap in, this is gonna be a VERY LONG POST):
I decided I was going to try to run through a mental list of stuff I haven't tried yet, starting with getting tested for Lyme; I know a few people here have tested positive, so I wanted to get tested myself just to rule it out, and then move on to the next thing. Unfortunately, this seems easier said than done - I have tried several times to get a doctor to provide the requisition form to get the blood work done, but each time the appointment gets cancelled at the last second with no explanation. (I am using an online service called Rocket Doctor which provides virtual medical appointments with doctors here in the province.) Finally after the 3rd or 4th attempt, one of the doctors told me that the requisition form for Lyme testing isn't the standard normal one, it's a special one called a Zoonotic Serology requisition, and you have to see an infectious disease specialist to get one. 🙄 Anyway, I kinda gave up on that because I was really just trying to rule it out anyway; I'd have been surprised if it turned out to be Lyme tbh.
So the next thing I wanted to try was topical Ivermectin, and I was able to get a Rx for that. But when I went to get it filled, the pharmacy called to let me know that it costs $260 (!!!) and asked if I still wanted it. I unfortunately can't afford that - and even if I could, there's no way I'm spending that much on something that might not even work, so back to square one.
I recently started another course of antibiotics to handle the secondary infection that continues to plague my skin; I'm on day 3 but improvement is slow. There's a pair of large lesions on my chin right in the crease under my bottom lip that simply WILL. NOT. HEAL. And even though I'm trying with every ounce of strength I have in me to leave it alone, the itch is unbearable. And it won't dry down - even scabbed over, the scab stays mushy and weepy, and the lesions become more and more inflamed until I have to deal with it, which involves scraping off all the sticky crusty shit on top and plucking out the stupid little plugs that keep popping up in there, then trying to start the healing process all over again.
One thing I've tried that seems to help a bit is that, in a moment of desperation, I used a combination of two different topicals on this spot - I dabbed it with Dapsone, which I know helps dry out the lesions, and then I dabbed a little bit of Mupirocin on top of that, thinking maybe a double dose of topical antibiotic would make it better? Idk. But the first time I tried this, the lesions really dried up and shrunk inwards quite a bit. It didn't heal, exactly, just shriveled. Unfortunately, the dryness is irritating in and of itself, and since it's on a part of my face that moves and stretches a lot, the dry skin/scabs just crack and open up and it all starts again. So I tried adding a touch of Vaseline to the mix to keep it from doing that, but the moisture/hydration it provides really makes the lesions kinda freak out and become all red and irritated again.
And I'm still experiencing this super weird thing where hairs are popping up in and around the edges of the lesions, mostly the ones on my forehead. So, I did another deep dive into Google to research it, and apparently hair growth is a thing that sometimes just happens in skin injuries, particularly with skin that's seen repeated trauma. It's pretty uncommon, but it happens. So that probably explains that.
During my deep dive, I followed a trail of information which led me to a medical article published in January of this year that I found very interesting, and could very well explain what it is I'm dealing with.
The condition is called "Acquired Reactive Perforating Collagenosis"; the name caught my eye because another member (apologies, I forget who) mentioned a similar condition with a slightly different name which I read up on, and seemed like a possible candidate. Here is a copy/pasted excerpt from the article:
...(1) umbilicated papules/nodules with central, adherent keratotic plug, (2) onset > 18 years and (3) histopathologic evidence of expulsion of necrotic basophilic collagen fibers into a cup-shaped epidermal depression (see Figure S1) [11]. The skin lesions in ARPC are almost always pruritic and have a predilection for the extensor surfaces."
Here is the link to the full article for you to read:
https://pmc.ncbi.nlm.nih.gov/articles/PMC12787290/
Side note: when I do these deep research dives, I always look up the definition of words and terms that I'm unfamiliar with in order to gain a full understanding of the article I'm reading, and so in this case it's important to note that "pruritic" is the medical term for "itchy skin", which is something that we all seem to have in common.
Anyhoo, this definitely seems pretty spot on for what I and many others are experiencing. The trick is to find a dermatologist that will ACTUALLY LISTEN TO ME and not immediately dismiss me out of hand. I definitely deeply regret ever mentioning my excoriation disorder, because this seems to have completely screwed me over in terms of being taken seriously. I have desperately tried to explain to several doctors/derms that yes, I am fully aware that my dermatillomania is severely exacerbating my skin problems, but that there is also a very real actual skin condition happening alongside and underneath this - that an excoriation disorder and an underlying skin condition are not mutually exclusive. To no avail.
During yet another sweep of Google for doctors and clinics that might be able to help me, I ran across a local place that does aesthetic skin treatments. This place offers a complimentary skin analysis using a technology called OBSERV; here is a copy/pasted description of what it does:
"...OBSERV captures detailed images of your skin under various lighting conditions. This includes UV light, polarized light, and other specialized wavelengths that highlight different layers of the skin, revealing underlying issues that are not visible to the naked eye. From sun damage to fine lines and deep pigmentation, OBSERV shows it all with impressive precision. With this multi-faceted approach, OBSERV helps pinpoint even the most subtle abnormalities, providing an in-depth look at your skin's condition. This level of detail empowers both you and your skincare professional to take a proactive approach to skin care, addressing issues before they become visible or more challenging to treat."
And so, since this sounded like something that may actually help determine the underlying cause (or at least add more solid information to the mix), I reached out to this clinic to inquire about it. During my correspondence with them, I confirmed that Yes, it can possibly help pinpoint some stuff about what's happening in my skin, and she made it clear that while they do not provide any type of medical dermatological services, they can and have recommend working with a dermatologist alongside, that the findings of the OBSERV analysis provides a good starting point. Also, after laying out the "short " version (lol) of what I've been going through, including the medical gaslighting etc, the lady I was corresponding with was so refreshingly compassionate and understanding in her email that I literally teared up reading it. It gave me a tiny glimmer of hope that perhaps I may have found someone who will listen, that there may possibly be a light at the end of the tunnel.
We both agreed that it's best to wait until my skin is in better shape to come in for the analysis, so I'm doing my utmost best to get these lesions somewhat/mostly healed to a point where I can take advantage of this service.
Additionally, during my Google sweep for local places that might help, I found the website for a clinic that provides both medical and aesthetic services; there was a notice on their home page announcing that they've welcomed a new dermatologist to their team, one who specializes in rare/unusual skin problems. I read the bio they provided for him, and it sounds like he might actually be able to help me (if I can get him to listen & take me seriously). I will eventually be requesting an appointment to see him, but I plan to do the skin analysis first so I can take whatever information it provides with me to show him. I am also in the process of compiling a FULLY comprehensive list of absolutely everything I can think of related to this skin condition - a detailed description of the condition itself, all the meds & supplements I'm on, all the meds I've tried, the mitigations I'm employing to try to curb the problem, etc, even stuff that may not be relevant. EVERYTHING. I figured this would be easier than trying to explain it all in person, because there's rarely ever time for that (because there's just SO MUCH), and I often get easily flustered and can't remember a lot of stuff that I intend to mention. This way I can hand over the document and say HERE READ THIS which will hopefully give him the full picture.
One last thing I wanted to mention: I've noticed that whenever I use the Mupirocin (as I mentioned earlier in this post), it leaves a weird white residue on my skin. I googled it to see if that was normal or not (which it apparently is due to its chemical structure), but in my reading I came across a Reddit post from about a year ago regarding this topical - some other people who have used this have reported some terrible itchiness, and reading through all the replies confirmed that many others have experienced this as well. So through anecdotal reports and more reading up on Mupirocin on medical sites, itching is a known side effect. 🙄🤦♀️ I am honestly PISSED about this, because I had made it VERY EXTREMELY CLEAR to the doctor who prescribed this topical that this condition includes an unbearable itch that is impossible to ignore. So why the hell would she prescribe a topical that makes my skin itchy?!? Hell if I know.
SO. That's my update so far. Sorry for the giant wall of text, but I wanted to make sure I included everything, I didn't want to leave anything out.
I will post again once I've had the skin analysis done, and hopefully have also seen this new dermatologist.
EDITED TO ADD (because of course I forgot something lol):
I googled to see if there are any therapists that might specialize in disorders such as dermatillomania, and I found something very interesting - apparently there's a fairly new branch of psychology they're calling "psychodermatology". Here is a link to a website for it:
It explores & attempts to treat those with a history of trauma (emotional, mental, etc) who have had auto immune/skin conditions develop as a result. I'm familiar with the fact that mental illnesses, traumas such as cPTSD, etc can & do affect a person physically. There's a ton of research corroborating this, which makes sense because physical and mental health are closely linked - one will always affect the other. And since most (or perhaps all) of us seem to have experienced a period of extreme stress in our past which triggers this condition, I wanted to mention it. Unprocessed trauma will often, if not always, come out in other ways, especially physically/biologically. It's kind of your mind & body's way of trying to deal with the trauma, and of trying to get your attention, like "Hey this is making us sick, please do something". So I've been searching for someone local who does psychodermatology, but I haven't had any luck so far. (And even if I did, I probably couldn't afford it anyway. Therapists are really expensive, and I imagine a specialized one like this is likely even moreso. 🙁)
Anyways, take care, everyone. Hang in there, do as much self care as you're able, and try your best to be kind to yourselves. ❤️
@25years Hi, I'm looking at some old posts/brainstorming. I know you have tried itraconazole before, but can you remind me - have you ever tried oral or topical ivermectin or permethrin cream?
@mizweirdo Hi, I recall going down the perforating collagenosis (PC) rabbit hole before. I previously decided it doesn't fit what we're experiencing, but who the hell knows at this point. I would expect more of us to have diabetes and/or chronic kidney disease if this was PC, but that's not a requirement, so could very well be. The thing that gives me pause is: why has no one here had biopsy results showing it's PC? It IS possible that the dermatologists send out biopsies marked as "rule out XYZ" and since they don't mention PC the pathologists who look at the biopsy miss it because they're simply not looking for it. It's also possible the biopsies weren't deep enough. I think it may be worth exploring...it sucks though, because if this is really what we have, then there really isn't a treatment for it. I'm going to read about it again 🙁
Here is one case report: https://www.sciencedirect.com/science/article/pii/S2352512625003388
It says "PC presents significant treatment challenges due to the absence of a standardized therapeutic approach. The majority of documented treatments are based on case reports, which include the use of allopurinol, itraconazole, retinoic acid, doxycycline, topical glucocorticoids, phototherapy, and traditional Chinese medicine."
Idk about calling these "treatments"...in my opinion (and experience) a lot of these things work only temporarily for most of us. I say "most" because I wonder what ever happened to the people who posted towards the beginning of this thread. Was an antiviral (like acyclovir) really the "cure" for some people? Was itraconazole really permanently effective for others? Or did these people get new lesions later on but never report on here? I really wish more people came on here with updates because it'd be SUPER beneficial.
I see you've also resorted to throwing everything & anything at these lesions again. Same here, sigh. I went through another period of things looking much better to total hell. I'm back to: well could be fungal...could be parasitic...could be autoimmune. Could be literally anything because what the actual fuck.
I don't even know what I'm trying at this point. I think just not to have a total mental breakdown.
@25years Hi, I'm looking at some old posts/brainstorming. I know you have tried itraconazole before, but can you remind me - have you ever tried oral or topical ivermectin or permethrin cream?
Yes, I tried the horse ivermectin years ago which helped but did not heal, I had a doctor give me 2 rounds of it about 3 years ago and shit was definitely coming out of me!!! Then just recently a doctor gave me 2 more rounds of the ivermectin and then some doxycycline. It definitely helped but did not cure me. Honestly the charcoal and wormwood pills are healing me. It's killing the shit deep inside! The hair things I swear is parasites. I say this because out of everything in the last 30 years I have tried did nothing until 1 1/2 years ago when I started doing the parasite cleanse stuff. Also peroxide is our friend. I use so much of it! The peroxide is healing the outside while the charcoal and wormwood heals the inside
Also I wanted to add, I have been tested for everything!!!!! I been put to sleep twice for the tube down the throat and the other end yikes! Breath test, etc. The only things that have came up positive is at some point I had chicken poxs, and the virus mono (which I never knew I had) the docs don't even know what else to test me for? I'm interested in what everyone else tested positive for
Hey thanks for your reply!
I agree that ARPC seems like it might be iffy as the cause; I did read about the fact that it's mostly been linked to systemic diseases like diabetes etc, and although I have not been tested for diabetes specifically, I don't believe this is the cause, at least not for me - mainly because I don't have any other symptoms of diabetes whatsoever. Having said that, I also understand that there are likely a number of different things that could be causing this same skin condition in each of us.
Also, regarding ARPC: I read through several different medical articles about it, and while they all made the link between ARPC and diabetes/kidney disease/etc, there were a couple of case studies with people who were diagnosed with ARPC who did NOT have any of these systemic diseases - it was instead determined that the root cause was repeated or severe skin trauma, which definitely lines up with my history of cysts/cystic acne and dermatillomania. A quote from one article reads:
"Acquired reactive perforating collagenosis (ARPC) is a rare entity usually occurring in adults with systemic diseases such as diabetes mellitus, chronic kidney disease (CKD), cardiovascular diseases, and malignancies, although drug-related and trauma-induced cases have also been reported."
Here's one case study involving a patient diagnosed with ARPC who did not have any of the other underlying diseases linked usually linked to this condition:
https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2024.1415545/full
And here is an article discussing Acquired Perforating Dermatosis (the umbrella term for the collection of related conditions, including ARPC), where it discusses several causes including skin trauma:
https://www.ncbi.nlm.nih.gov/books/NBK539715/
So for me, this seems like something worth pursuing given my history. The first link I posted above speaks of eosinophilia, and eosinophils was mentioned in the surgical pathology report from the biopsy I had in the fall, which is why it caught my eye.
And you're right - I'm definitely grasping at straws here. I'm desperate to get this nailed down and get some kind of treatment plan in place, because right now the only "treatment" providing any kind of relief is the extraction of the white plugs, which of course is NOT a long term solution and ultimately only serves to worsen the lesions.
But as we all know, the deep itch is unbearable. I've been trying to explain to derms (to no avail) that it's impossible to ignore, even for the most disciplined person - and as you might imagine, for someone who struggles with dermatillomania, it's exponentially worse.
But I'm trying. I'm trying like hell. Unfortunately, in the absence of any other treatments or course of action, the only thing I can do is extract the plugs and hope for the best. 😞
I plan to contact the clinic with the new dermatologist soon, the one I mentioned in my previous post. I'm going to present him with all of the information I've gathered so far, and hope & pray that he actually listens to me and takes me seriously. And perhaps he has some novel treatments I can try? Idk. This guy is supposed to be specialized in rare and misdiagnosed skin conditions, so I'm crossing every single one of my fingers.
@mizweirdo Honestly, at this point, I'm at a total loss. I have no fucking clue anymore. I can't even pin point what exacerbates them. I'm better one day and 2 days later back in hell. I can play devil's advocate & give you reasons as to why a certain disease likely doesn't fit, but I'm willing to consider anything & everything. I would not rely on eosinophils as confirmation it's PC because there are MANY causes of eosinophilia (like parasites). That's another thing, @25years had a biopsy quite a while ago that showed "arachnids" and I thought "wtf spiders?", but now I'm revisiting things, I discovered "arachnids" on biopsy can mean scabies or demodex mites. There was someone on here that was adamant about this being demodex & I gave her shit because demodex are not visible to the naked eye - they simply do not get big enough to be visualized without a microscope. But now I'm like...what if we have some sort of variation, or perhaps infestation that's severe enough that they can be, or maybe the plugs really are keratin proliferation due to the demodex. I don't know.
Speaking of eosinophils, I also want to mention that I freaked out this weekend because I looked up eosinophilic folliculitis (which is what my "rash" looks like when these things start) and it's strongly related to HIV. Have you all been tested for HIV? I think I'm being dramatic, but on the other hand...I'm definitely planning on getting tested.
I'm also wondering if it's not worth just fucking trying topical ivermectin at this point BUT not the horse gel one because that formulation doesn't penetrate skin the same way that the ones meant for skin do (the ones meant for skin have other inactive ingredients meant to penetrate more effectively & this makes a huge difference because sometimes people even use OTC ivermectin 0.5% for lice & it doesn't work, but a slightly stronger percentage available by prescription only actually treats them). The horse gel should not be considered the equivalent of the topical ones meant for humans.
Another thing that's making me super frustrated is that trying all these topical things really isn't the long term answer if we can't figure out what is causing new lesions to develop. It's just so discouraging.
@25years - are you currently working on getting rid of your old lesions, or are you still getting new ones too? When is the last time you had a new lesion? If wormwood is working, but you're still getting new ones maybe it'd be worth it to add clove capsules & black walnut. I did a parasite cleanse a while back & each herb targets different stages of the parasite life cycle. But it also depends on what fucking parasite we're dealing with & nobody knows, ugh. Are you cycling the wormwood - like 1 week on then x-amount of time off? Wormwood really strains your liver if taken continuously. Honestly, I'm just so sad for all of us. The shit we put ourselves through to try to get rid of this is astounding.
Also I wanted to add, I have been tested for everything!!!!! I been put to sleep twice for the tube down the throat and the other end yikes! Breath test, etc. The only things that have came up positive is at some point I had chicken poxs, and the virus mono (which I never knew I had) the docs don't even know what else to test me for? I'm interested in what everyone else tested positive for
Also, I had ct scans, X-rays and MRI's, I think these things are eating the cartilage and causing muscle spasms and muscle weakness. From the MRI I have a hole of cartilage missing in my wrist, my knee has 70% of the cartilage gone. Does anyone else have joint problems and muscle spasms? Also, I forgot to add in I have low iron
@skinshit you most likely have a spirochetal infection causing Morgellons-like symptoms. Have you been tested for Lyme or TBRF with an in-depth test (usually igenix)? The tests covered by insurance are extremely unreliable unfortunately. Ivermectin taken orally also helped my symptoms, but Ive seen the best improvement when combining it with combination intracellular antibiotics taken long term. There is also a book written on it by the leading researcher of morgellons disease, Dr. Ginger Savely, that I found very helpful. I know everyone is on their own journey and I dont like to push people, but the longer you go with this infection without treating it, the more difficult it is to achieve remission. I wish I had learned what it was sooner, but whats done is done now. I would also recommend getting a cheap skin microscope with magnification to confirm you have the fibers and hairs under the skin!
@mizweirdo Honestly, at this point, I'm at a total loss. I have no fucking clue anymore. I can't even pin point what exacerbates them. I'm better one day and 2 days later back in hell. I can play devil's advocate & give you reasons as to why a certain disease likely doesn't fit, but I'm willing to consider anything & everything. I would not rely on eosinophils as confirmation it's PC because there are MANY causes of eosinophilia (like parasites). That's another thing, @25years had a biopsy quite a while ago that showed "arachnids" and I thought "wtf spiders?", but now I'm revisiting things, I discovered "arachnids" on biopsy can mean scabies or demodex mites. There was someone on here that was adamant about this being demodex & I gave her shit because demodex are not visible to the naked eye - they simply do not get big enough to be visualized without a microscope. But now I'm like...what if we have some sort of variation, or perhaps infestation that's severe enough that they can be, or maybe the plugs really are keratin proliferation due to the demodex. I don't know.
Speaking of eosinophils, I also want to mention that I freaked out this weekend because I looked up eosinophilic folliculitis (which is what my "rash" looks like when these things start) and it's strongly related to HIV. Have you all been tested for HIV? I think I'm being dramatic, but on the other hand...I'm definitely planning on getting tested.
I'm also wondering if it's not worth just fucking trying topical ivermectin at this point BUT not the horse gel one because that formulation doesn't penetrate skin the same way that the ones meant for skin do (the ones meant for skin have other inactive ingredients meant to penetrate more effectively & this makes a huge difference because sometimes people even use OTC ivermectin 0.5% for lice & it doesn't work, but a slightly stronger percentage available by prescription only actually treats them). The horse gel should not be considered the equivalent of the topical ones meant for humans.
Another thing that's making me super frustrated is that trying all these topical things really isn't the long term answer if we can't figure out what is causing new lesions to develop. It's just so discouraging.
@25years - are you currently working on getting rid of your old lesions, or are you still getting new ones too? When is the last time you had a new lesion? If wormwood is working, but you're still getting new ones maybe it'd be worth it to add clove capsules & black walnut. I did a parasite cleanse a while back & each herb targets different stages of the parasite life cycle. But it also depends on what fucking parasite we're dealing with & nobody knows, ugh. Are you cycling the wormwood - like 1 week on then x-amount of time off? Wormwood really strains your liver if taken continuously. Honestly, I'm just so sad for all of us. The shit we put ourselves through to try to get rid of this is astounding.
Skinshit, I just bought some strong collagen pills, I haven't even opened them yet! I'm still getting these things out of me! I still have a couple more areas that is taking forever to get out! The vibrations really help loosen things up! I was reading how parasites are ancient and know how to hide! I really wish we had a name for this. I have a strange thing that has been happening now, as everything is coming out this different white fluff of hair cloud things and real white soft hair things are coming out from areas that been fucked for years! It's so strange like a cotton ball but thinner and softer?! It almost looks like a bacteria or something? I feel the relief inside my muscles and everything when it comes out? I think this may be the "main" part on the inside. It seems there are the fire ant red hairs, the stingy white hairs, the plastic barbie hair colorful ones, the regular brown ones. And what else is strange is how they can be bone straight to curly? Thick to thin? I have a couple new lesions, of course I tapped it up immediately, as the hair things come out the sore goes away.